The Story Behind Taraasha Foundation
“From Loss to Purpose — Ensuring No Family Fights Alone.”
Taraasha Bhargava
Remembering Our Angel
Remembering Our Angel
Taraasha Bhargava was a joyful and loving child who brought happiness to everyone around her. She loved music and dance, and her elder brother would often sing for her, which she enjoyed immensely.
She also loved chocolates and would light up with the smallest joys. She even went to school for around 6 months in her early years. She shared a special bond with her grandfather and was truly the apple of our eyes.
Everything seemed normal in the beginning.
However, around the age of 1 to 1.5 years, we noticed delays in her development — difficulty in speaking and later in walking. Despite multiple therapies and medical consultations, her condition gradually worsened, and she began facing difficulty even in swallowing food.
Fucosidosis
After extensive investigations, genetic testing revealed that Taraasha was suffering from Fucosidosis, an extremely rare genetic disorder caused by deficiency of an enzyme, leading to progressive neurological damage.
Due to its rarity, very few cases are diagnosed globally, and in India, testing and treatment options are extremely limited. We were told there was no effective treatment and that her lifespan would be short.
But as a father, giving up was never an option.
We reached out globally — to Japan, Singapore, Italy — exploring every possible treatment option. Eventually, we connected with Dr. Gaurav Kharya, who suggested a Bone Marrow Transplant (BMT) as a possible intervention.
Finding a suitable donor became the biggest challenge. After testing family and extended networks, and working with multiple NGOs, we found a matching donor after one year.
The treatment journey was extremely challenging — medicines were expensive and often had to be sourced internationally. Despite all efforts, we lost Taraasha on 18th September.
Losing her shattered our entire family. It felt like everything had come to a standstill, and a part of us was gone forever. But somewhere within that pain, a thought stayed with me — that Taraasha will always be with us, whether physically or not. Her presence, her memories, and her spirit would continue to live on in everything we do.
That is when I realized that her journey could not end here. The challenges we faced — the lack of information, difficulty in finding the right treatment, arranging medicines, and the long search for a donor — no family should have to go through this alone.
We wanted to turn this pain into purpose, so that Taraasha's journey becomes a source of strength, guidance, and hope for others.
She was a true fighter — always smiling and full of positivity.
Why Taraasha Foundation?
Taraasha Foundation was created in her loving memory, with the aim of supporting families dealing with rare diseases. Our mission is to ensure that no family faces the same challenges alone.
Right Information
Cutting through confusion to find reliable answers faster — no more endless searching alone.
Treatment Options
Connecting families to the right therapies, specialists, and care protocols across India.
Medicines
Helping source rare medicines, navigate international imports, and reduce cost barriers.
Donor Support
Expanding donor networks so every family can find a match when time is critical.
Family Connections
Building a community where families share knowledge, strength, and solidarity.
Emotional Guidance
Compassionate counselling and consistent support through every stage of the journey.
Through this foundation, Taraasha continues to live on — touching lives and creating impact.
In Her Loving Memory
Be Part of Taraasha's Legacy
Every action — big or small — helps a rare disease family feel less alone.